About me

From the AVM SURVIVORS web site: "Arteriovenous malformations (AVMs) are defects of the circulatory system that are generally believed to arise during embryonic or fetal development or soon after birth. Although AVMs can develop in many different sites, those located in the brain or spinal cord can have especially widespread effects on the body".
I am currently undergoing embolizations with Dr. Wayne Yakes @ the Swedish Medical Center in Englewood, CO every 8 weeks! Our lives are either planning a procedure, having a procedure or recovering from a procedure! The trick lately seems to be to keep the "bleeds" under control! My husband Mark is also my caregiver! He has become an expert wound care therapist, not to mention all around bundle of being just exactly what I need to get through the day and this ordeal we call an AVM! I recently finished 10 years of Embolizations w/Dr. Yakes and am finally ready for my next stage - Debulking and reconstructive surgery w/Dr. Robinson in CO - he is a dentist and plastic surgeon! Best advice to an avm patient - Stay positive and surround yourself with supportive people! Lots of faith, prayer and love are all crucial too!

Saturday, June 22, 2013

Hi Everyone!

Well, It's been a little over a week that I've been back from Denver and doing well. Doesn't mean I'm happy, but @ least I'm not bleeding! For those of you maybe not too familiar w/my situation (Hi Lindsey!), for a while I would have severe bleeds from inside my mouth. This is spontaneous and has happened so severely @ work that I've had to be transported by ambulance to the hospital. I'm really trying to make a conscious effort to feel better about my whole situation.
Even though I got the "all done until a check up in 6 months" from Dr. Yakes, I can't even enjoy that since I've had a few bleeds since leaving Denver. So am I REALLY done, is the bleeding just a "hic-cup"? Let me just say that I love my life. Everything about my life is awesome, except for the avm. I am very blessed to have a family that loves and support me,
(here are my nephews Mark and Davis)

a fantastic husband who is my soulmate and an amazing cook, the 2 cutest furry kids in the world and terrific friends and co-workers!
Here is one of my favorite photos of Mark and Hanz!

This next one was taken the day we got Bella! Probably the only time she was smaller than Hanz! They are Brussels Griffons, like Verdell in the movie As Good As It Gets with Jack Nicholson and Helen Hunt!

I love comedy (Big Bang Theory),

music (Taylor Swift - LOVE her! Since I can't hear well right now, I enjoy blasting her cd's in the car - all her songs are so cool! Did you know her song Back to December from her Speak Now cd is supposed to be about what happened between her and Taylor Lautner from Twilight? I loved seeing the two of them together in the movie Valentines Day!

The Band Perry - Neal, Kim and Reid)

and I enjoy several hobbies: cross stitching, rubberstamping, calligraphy, reading, blogging). I've always loved to write, so this gives me an opportunity to do that and to vent and share!
Did you know that I have an Aunt that is about to celebrate her Jubilee in a few weeks with the Sisters of St. Mary in Oregon? We grew up close to Sister Juanita, she is one of my moms younger sisters - she was my inspiration for learning calligraphy! Sister J. did all our wedding rehearsal dinner menu's in calligraphy @ Edelweiss!! Here she is and I'm including a photo of her bestie Sister Adele! I really am blessed to have such an awesome family!

As some of you fellow avm-ers know, having embolizations results in swelling and steroids are needed to reduce swelling. I used to love steroids - it meant energy and feeling better! Unfortunately being on steroids for any length of time also means a huge increase in appetite, can't wind down enough to get a good nights rest, skin drying to cracking/splitting and losing bone density. My potassium is always low lately, so I take extra potassium - if I take the liquid form, it tastes like eating a cube of salt (even w/the mango flavoring from the pharmacy) and the pill form is huge and chalky! Ugh! I also take extra iron since I have/had frequent bleeds and calcium to help my bones and hair! Everything on the left side of my face is messed up due to the avm.
I recently came across this photo - this was when Dr. Yakes aggressively went after a huge artery I had - ugh! This took several years to heal! Mark would do my wound care between sessions when I would go in to have it cleaned - and had to have it covered to keep germs out. It was hot and uncomfortable.

My family always tells me how "brave" I am - what does that really mean? I feel like I don't have a choice but to go out into the world and live my life. What's the alternative - cowering in the corner and shutting down? I'm sooo tired of people staring @ me when I'm @ the grocery store, or I go out to grab a bite to eat. Wish they could be a little more subtle about it. People need to explain to their children that we all don't always look well due to complications. Please educate kids!
Avm's don't go away either - having one means seeing it through until a doctor can get rid of it. If you can find a doctor that is willing to take you on as a patient - believe me, there's been a couple of doctors not wanting to touch this and can't blame them either! I feel it is a curse. It isn't something that can be dealt with easily - it's an ongoing process that can take years of treatments.
This has been extremely difficult on my marriage - how could it not be? Mark and I will be married 22 years in December. Here are some old photos I ran across. I wish I could wear makeup - someone asked recently if I could wear foundation. No - my skin is soooo sensitive right now - even if I could apply it, removing it might cause irritation or bleeding. I have lots of little blood vessels all over right now that hopefully will be taken care of later. The only thing I might be able to do is wear some eyebrow pencil and some eye shadow and mascara. For a long time I was very weak from losing so much blood, that I didn't feel well enough to even think about trying to improve my appearance.

Marriage is difficult enough on it's own, without throwing something like an avm into the mix! If I'm going through hell, my husband Mark is right there with me. He's had to clean up the bloody mess I make when I have a bleed, as I'm certainly not feeling well enough, or can't bend over to get it done myself! He's handing me gauze to pack my mouth with as I lean over the sink trying not to get blood everywhere!
I've been hacking lately due to allergies, so I asked Mark to replace my trache. I'm so lucky he does these things for me - I know men that won't even carry their wives purse to help them, much less clean and change out their trache! My friend and neighbor Terry is a respiratory tech, so she has always been available to us for any help we need in that area! Back to Mark being my caregiver ....
Of course there's times we lose our patience and lash out - no one could blame Mark. It isn't just a matter of my saying, "Oh, I don't feel well, but I'm going to be as nice as I can anyway." When you're gushing blood clots or in pain (or both), all you can think of is stopping it in any way possible. I don't like to wander too far away from home, as of course that is where I can be most comfortable. I'm doing good to get to work and back. I pull a hobby cart full of anything that will make my life easier every day to work! I have meds, snacks, books, magazines, cd's - anything that will help get me through the day!
Yesterday after work, I had asked Mark if we could take our kids to Petco and Petsmart, as they hadn't really had much of an outing lately. It was really too soon for me to go on an outing after my last treatment. It's been so hot out, that we don't like going out in the yard to walk Hanz and Bella on the leash - and this way, we all get out of the house for a little fun and stay cool too! I don't know why I even bother w/Petco (diversity), as their employees are never friendly or helpful. I've even spoken to the manager when I'm seeking a particular item, and he's just as bad. Anyway, by the time we left Petco and then went to Petsmart - (where we were cheerfully greeted by employees), I was already planning what I could eat the minute I got home! Yesterday was my last day on steroids and I knew I had to have food right away when I got home! Soon as we walked in the door, Mark started making me a baked potato (loaded) while I had a peanut butter jelly sandwich and then I had a big bowl of Basmani rice! I have to eat soft foods due to losing some crowns and some of my teeth are damaged from the bleeds and have cracked! I am limited to how wide I can open my mouth w/all the avm things going on, so it's been difficult to eat, brush and function normally.
Thought you might find this interesting. The following is a description of "phase one" of the proposed treatment plan that Dr. Robinson (Cosmetic Surgeon) wants to start my reconstruction with: Keep in mind I hope to be able to hear again on the left side and need an earlobe reconstructed, amongst other things.

Since the left side of my face has been so damaged with embolizations, Dr. Robinson said he may be able to use some of the skin under my chin in that area.

In speaking to my brother-in-law Greg, DDS., he's told me how some patients have all their teeth removed @ once! I can't even begin to imagine. It's bad enough I have to have any removed, not to mention what is going through my head is - will the blood start gushing upon removal? It shouldn't, as I'm supposed to "be done" with the avm, but this thing has a mind of it's own. How can I not be concerned or anxious? I'll be living on mashed potatoes and liquids for a while until my gums heal and I can have "temporary teeth" until possible titanium implants later? Right now I drool due to my split lip - can't wait to get that fixed. Hard to use a spoon and must use a straw to drink from a glass. I can drink bottled water from small opening. All these things are going through my mind and I'm having to deal with figuring out what I can eat, am I drooling, bleeding, hacking, etc. - so my primary concern isn't always being the best patient possible. Poor Mark works all day (out in the hot sun a lot) then comes home to help take care of me and cook and keep our home running! He feeds, bathes and cleans up after our furry kids Hanz and Bella. They are essential to my recovery - they make me so happy and help me forget what I'm going through, at least for a bit. They are both have a good disposition (esp. Hanz) and we adore them! Bella is a live wire and we can't help but laugh @ her antics! My job is to snuggle and love them! Here are my kids, making sure mommy knows they love her!

My sister and her husband Greg have been instrumental in helping us get through this terrible ordeal. They help monetarily of course, but they supply us with lots of love, prayer and time! For the most part, I'm a happy person, but going through all of this crushes my spirit @ times, and I sometimes wonder how I'll ever get through it. I do realize there are avm patients that may not be as lucky as I am or are going through this on their own - but believe me, this is the toughest thing I've ever been through. I'm grateful that I don't have children to worry about - can you imagine having to go through this and have to be trying to find someone to take care of my kids when I'm in CO! We have awesome neighbors that take care of Hanz and Bella when Mark accompanies me to CO - breaks my heart to leave my babies!
In my mind, how I feel and how I look are two different things. When I feel well enough and I'm enjoying music - I'm not thinking about how I have facial paralysis - how I can't sing along (hard to understand what I'm saying with my split lip and bulk from avm that hopefully will be debulked soon) - not to mention I have hearing loss on my left side. All I can hear on the left side is my pulse.
I am grateful not to have had any bleeds for almost 5 days. Mark has a pulled pork going in the crockpot that smells wonderful! I believe there is some acorn squash and fries to go with it!!! I'm doing some laundry and need to go check on the furry kids to make sure they're not into any trouble! I went to Mom's earlier and Mark texted me that he found Hanz and Bella with some bread on their bed. One of my step-sisters had a dog that ate a loaf of bread and died, so of course I was horrified to know Mark had found bread on the floor the kids had gotten into! Luckily, I don't think they ate any of it before he found them! Whew!
I may tweak this here and there, but I've been wanting to write some more about how I'm feeling and what I'm going through right now.

Sunday, June 16, 2013

Hi everyone! How is everybody? Well, this blog is long overdue, but I figured I would wait until I got back from my latest trip. Hanz doesn't like my being on the computer and I feel guilty if I neglect him too long!
I was doing well for a while, but had an occasional minor bleed. Kept trying to get an appt. w/the plastic surgeon Dr. Robinson to have one more consultation before he starts working on me. Plastics was waiting for an "all clear" from Dr. Yakes before starting anything else!
Had a great Birthday in May! One of the longest friendships I have is w/Sylvia Wilson, she sent me beautiful flowers to work and we had dinner @ her house. Mark had made one of my favorites - lasagna! I've known Sylvia and another of my besties in Dallas for almost 40 years! We met when we were one! No, we met about 13 years of age in middle school when my family lived in Kingsville, and we've kept in touch through the years! In fact, it was Patty we stayed w/in Dallas when we drove up to get Bella!

My co-workers (clerical team) and my new Supervisor Kathleen surprised me w/a cake on my birthday! I was called to Administration thinking we had a meeting and was surprised to have a celebration! L-R Christina, Gina with her arms around me, Lucinda behind her. Olga in the green (love her - we were in choir together many years), Vanessa behind her and Manuel next to Vanessa! My co-workers are awesome - very supportive of my situation!

Celia went w/me on this trip. We had heard how there were fires going on in CO - one near Colorado Springs and another in the Royal Gorge. We could smell the smoke in the air when we arrived!
Immediately got our car rental and headed to Swedish Medical Center to get registered! Dr. Yakes P.A., Kelly is the one that took are of all my admissions and patient coordinator Becky was also there. After going over paperwork and a few concerns, Celia and I went across the street to have dinner while Kelly took our luggage up to my room! Celia frequents this restaurant when I'm @ Swedish, so it's like when Norm walks into Cheers - everyone recognizes her!

After dinner, got settled into my room. First thing I did was put the throw on the bed that Celia had given me for my birthday of the Big Bang Theory gang! Got my mediport accessed and my designer Zac Posen gown - yeah right! I read a while after Celia left to go to the hotel. Raided the fridge for some juice - some nurses came by to say hello since they had seen my name on the schedule. It's such a great feeling knowing so many people care and are doing their best to make you feel better! I got a chance to see Mandi, another of Dr. Yakes P.A.'s during the day Saturday. Also one of the Internal Medicine doctors came by that was on duty. I've met him on several occasions and asked him for Dr. Pinsinski (also Internal Med. doc). Apparently Dr. P. was out of town, but Dr. Acuna told me Dr. P. tells him I'm a favorite patient. Everyone @ Swedish is so awesome! Barely got a chance to talk to Victoria in Housekeeping - she was surprised to see me! Guess when we told her I was "done" she thought I wouldn't be back. Fortunately, Dr. Robinson (plastics) works out of Swedish, so I'll be around another few years there!

Had an MRI scheduled in the morning - can't tell you how much I dread getting into that tube!!! Claustrophobic!!! I know that there are open MRI's but apparently the closed one takes the best images. I had been prescribed a higher dose of Xanex to get through that procedure. Still experienced enough anxiety that I was so relieved when it was finally over!!! Got transported back to my room and had to wait until almost 3pm for the angiogram to be done! So, that was all day w/no food for me! It wasn't so much hunger as it was thirst that was bothering me!
Celia and I went to the hospital gift shop! Again, we frequent it enough that the lady who runs it recognized us! I had been wanting a chain for my glasses that I found there - it's a light pink crystal bead that it's made from. Also wanted to add to the lanyard I wear for work - saw a cute "pulley part" that has a red heart shaped smiley face w/a bandaide over one side of it's head! Celia also liked these really cute "purses" that she got one for each of us! A long shoulder strap, but you had just enough room to carry your phone, license and credit card! I'll have to take a photo to show you - pretty!!
Back up to my hospital room to get ready for the angiogram. Was happy to see Dr. Jen Qin as my anesthesiologist and of course Dr. Yakes always comes over to say hello! Dr. Yakes called Celia when I was done - he used 8 cc's of alcohol under my chin. I had to wait until 8:30 p.m. to be able to get out of bed, due to the groin stick for the angio. Oops! Gotta go - Hanz caught me on the computer and wants my attention! To be continued!

Hi again! One of my favorite techs was on duty the following day - Alex a/k/a "Taylor Lautner" from Twilight. He always signs "Taylor" on the eraser board in my room and pops in to make sure I'm ok! My friend Dorinda had given me these cute puppy slippers that have the non-skid on bottoms - everyone got a kick out of them!
Would you believe I didn't sleep that night? Finally closed my eyes @ 6:00 a.m. - might have slept a couple hours before getting up. Had to wait for my daily meds when the new shift got settled in after 7:30a.m. so I could then get my medi-port deaccessed and it would be easier to take a shower. Ordered breakfast and finished that, got deaccessed and showered. Celia was with me by then and we finished packing up and headed to a favorite diner called Sam's to have lunch. Headed to return car rental and then on to the airport. By the time we landed in Houston Hobby I had a slight bleed while waiting to board the flight to Corpus Christi. Got in about 11pm - I was so glad to be home!
Celia is a great traveling companion! So generous and caring - makes these trips manageable for me. We are all constantly in touch w/one another during these trips especially.
Saturday I had a couple minor bleeds in the morning and then another that was harder to control that afternoon. Don't understand why - maybe tissue breaking down? I'll be writing to Kelly in CO to ask. How can I feel I'm making progress unless the bleeding stops? I've felt just blah all day today. Just did some light housekeeping - can't pick up anything heavy for @ least 4 days after having that angiogram. Mark has been fantastic - preparing all my favorite things to eat. Since Dr. Yakes did an embolization, I've got to take steroids for the swelling and that always increases my appetite tremendously.
I'm sure I'll be posting more photos or tweaking this a bit. Some of the photos I took w/my phone haven't make it to the computer yet, so I'll take care of that soon.
According to Kelly, Dr. Yakes has given the all clear for me to start the next phase of surgeries w/Dr. Robinson. Right now we're waiting a few weeks for all the paperwork on what Dr. Yakes did to get to Dr. Robinson, plus getting insurance checked and all - so no telling right now when I'll be going to CO again. Just hoping I won't have anymore bleeds!!!
Recently went down memory lane w/2 of my friends - Dorinda is vacationing in Iowa where her folks still live and she came across this poster! We used to love to go see Steve O'Neill playing @ Chelsea's Street Pub! You can actually see his performance of the song "Web of Deception" on U-tube! Fun times! His drummer was funny too!
The worst part of going to CO for me is missing my furry kids! See photo of kids piled up on Mark! Can't really tell where one ends and the other begins - weird!

Recently learned of another of Dr. Yakes patients from the Facebook support group - hope to catch up to you soon Lindsey! I mentioned to Kelly and nurses that I had been in contact w/you on FBook and they knew who you are!
I plan on going to work in the morning - just going to carry on and I'll write to Kelly and asked her what's going on w/my bleeds. Ugh! I probably shouldn't have blogged until I know more, but I know a lot of you want to know how my trip went! Couldn't do this w/out all your love, prayer and support! I am very blessed to have so many people that care. I'm often told how well I handle my situation - but I really don't. If it weren't for me surrounding myself w/all your positive energy, I don't know where I'd be! I mainly have pretty good days - but having bleeds just really sets me back and gets discouraging! Kelly assures me they'll get me through this - just seems hard to get a grip on that sometimes!

I'm off to get a few things ready before work tomorrow and Mark set up the Daytime Emmy's to record on the dvr. He'll be making something Italian for dinner - yum! He surprised me with making a cake for dessert!!! Will keep you posted and add more information soon!

Love to all of you!

Cyndi

P.S. I hope to get this pattern sometime and complete it! Recently started feeling well enough to pick up my cross stitching hobby again! Working on a couple other projects before even thinking of the one below!